His ability to cough has become severely impaired, putting him at great risk from coughs and colds, which can develop into pneumonia.

Consultants at the Royal Brompton Hospital made an application to NHS Sussex, the area’s primary care trust, for a cough assist device for Jon.

However, the application was turned down with the funding request panel stating “the evidence of the proposed treatment is weak and there are currently no published studies assessing cost-effectiveness”. ,

Jon, 30, of Furze Road, is now appealing the decision, which he says makes “no financial sense”.

He said: “They turned the application down despite the fact it listed 18 articles by well-respected consultants from the UK and across the world which demonstrate the efficiency of cough assist devices in prolonging life and preventing hospitalisation. I don’t know what else I can do to convince them.”

Without a cough assist machine, which uses a combination of air pressures to simulate a cough, Jon would have to admit himself to Worthing Hospital, which has one of the devices, each time he suffers a respiratory infection.

He said: “With the cold and flu season approaching, I am really worried the refusal to provide this equipment will seriously threaten my life.

“It just makes no sense to me as providing this machine would allow me to continue to treat my condition at home and avoid costly and planned hospital admissions.

“Lack of effective treatment could lead me to need a tracheostomy over the long term, which would require me to have round-the-clock care from trained nurses, at a cost of £70,000 to £90,000 to the NHS per year.

“The cost of a cough assist machine is £4,000, to stay in hospital for just one week would cost much more than that.”

A spokesperson from the Royal Brompton and Harefield NHS Foundation Trust said: “We are aware of Mr Hastie’s application for a cough assist device, which has now gone to appeal.

“We believe this may support him to manage his condition.”

Jon was diagnosed with the life-limiting, progressive muscle-wasting condition at the age of three.

He has limited mobility, and is able to use only his arms but has already survived beyond his life expectancy for an individual with Duchenne, and has gone on to complete many amazing achievements in his life, such as gaining a master’s degree and a PhD in government.

Jon, who works part-time job at the Federation of Disabled People in Brighton, has recently produced a documentary film, called A Life Worth Living, based on other extraordinary individuals living with Duchenne in the UK.

He said: “When I visited other Duchenners I found most of them had cough assist machines funded by their local PCTs. I don’t understand the discrepancy.

“It’s just so demoralising – I’m only asking for a £4,000 piece of equipment. I feel like I have to fight for everything.”